"I am not defined by having multiple sclerosis"


20 September 2017

Maisie, who was diagnosed with MS in June, aged just 14, hosted a My Garden Party in the summer, and raised thousands of pounds to help us make a difference for people with MS. Here she tells us what it meant to fundraise for the MS Trust and why she's determined to live her life like 'any other teenager'.

Hello, my name is Maisie, and I have been recently diagnosed with multiple sclerosis...

In June 2017, aged 14, I began to feel unwell with dizziness at school. It had been a very hot week and I was doing exams, so thought nothing of it. After a few days, I started seeing double and was admitted to hospital.

After numerous tests and 10 days in hospital, I was told that my right eye was temporarily paralysed, meaning I had to go on a steroid drip for five days (which resolved my ill eye).

With the results of the MRI scans confirmed, the doctor told me that I had relapsing remitting MS, which means that my illness is unpredictable, and currently incurable. The doctor said it was the first case the paediatric ward had ever seen!

Just like other newly diagnosed patients, I was reassured that I had a label to my medical condition, and that there were many neurologists, consultants, and MS nurses that could look after me through the scariest of times.

What struck me most was that on my MRI scan it was evident that I’d had a previous lesion – weeks, months, even possibly years before my initial diagnosis. I’ve never experienced or noticed anything before, so it was a shock to my family and I to find out that this wasn’t my first relapse. I then thought to myself, there must be hundreds (potentially thousands) of people, who are suffering with MS in their daily lives, but just haven’t been diagnosed yet. I’m extremely grateful to have had a diagnosis in such early days. Therefore, I felt obliged to take the challenge upon myself to start raising money for the Multiple Sclerosis Trust.

I really wanted to thank my friends, family and the MS Trust for their help and encouragement during the days I felt my worst, whilst raising money to promote and support the charity. The obvious way that this could be achieved was to host a garden party for everyone to enjoy.

After weeks of planning, just short of 100 family members, friends and neighbours attended the party. Despite the British cold, it was incredibly overwhelming to see how much people cared, and the amount of donations everyone was lovingly willing to give. The focal aim of the evening was to spread awareness of multiple sclerosis.

Overall, the fundraiser was a massive success! We managed to raise over £2000 through online giving, and a further £3,000 at the party! I’m so thankful to everyone that has donated... I never envisaged raising this much in such little time - I’m extremely overjoyed!

I am so grateful that my MS was diagnosed, therefore meaning that I can begin treatment soon.

I’m hoping to start my regular medication soon - a Rebif injection three times a week, and I hope to continue my life the same as any other teenager. Admittedly, I’m surprised what I’ve been capable of, and I’m motivated to achieve more by how positive I’ve handled all this. I’m proud that I’m able to promote my illness and share my story with the rest of the MS community.

After all, I am not defined by having multiple sclerosis, it is just an aspect of my life...